tv Book TV CSPAN May 30, 2011 9:30pm-11:00pm EDT
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do you have friends and you sometimes get into a disagreement? do you ever disagree with your friends? right, so it is hard to what you should do is try to see, try to imagine to yourself, what is going on from their point of view? i think the world would be more peaceful and our communities would be more peaceful if we learned how to do that. instead of having debate, and this is for teachers out there, do structured academic controversies, you know, where what you do is you have people
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debate, have your students debate a subject from one perspective and then flip it around and have them debate the other side. and then write a position paper that you know, involves multiple points of view. that is such a valuable thing for young people i think. sometimes i don't tell them what sites they are arguing until 15 minutes before so they have to learn both sides of an issue, and then they can't get stuck in one point if you. >> can watch this and other programs on line at otb.org. up next on booktv, the winner of the 2011 pulitzer prize in general nonfiction presents a history of cancer. the author recounts the early documentation of the disease and profiles of the first patient to receive radiation and chemotherapy treatment. this is about an hour and a
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half. >> i have a personal relationship to the bookstore. i was a student close by here and i'm a graduate from a foreign country, and when i could get my spirits up i would come to the bookstore and spend time here. there is something wonderful about things coming back and so thank you very much for having me here. and thank you for those really wonderful words of praise. i must say my favorite praise that i receive for the book came this morning when i was reading to my -- through my e-mails and someone said to sent to me a little note from some blogger who says are there cliff notes? [laughter] it's been my lifelong ambition to have a book for which there are cliff notes. so if anyone is inspired, please let me know. i would be delighted.
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i thought i would begin today rather than talking about the content of the book, i thought i would begin today by talking about -- something you don't get from the book itself, sort of a behind-the-scenes look about what motivated some parts of the book and how -- first i have have to offer note of apology which of course this book when it was finally handed in its draft form was three times its length. and by necessity of a vast amount of information had to be cut. there is a fundamental -- my editor said 500 pages is the final limit, no more and he ended up with about 600 that was a bargain. but nonetheless, i have to start with a note of apology saying not every story could make it
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into the book so i would welcome other attempts to write further histories of a disease that will continue to be part of our lives in the future. that said, i wanted to talk a little bit about the process of writing the book and in the first moment, one of the most biblical moments in the writing of the book happen sometime early on when i was confronting the vastness of the challenge in the vastness of the challenges here you have a history that spans about 4000 odd years, about 100 odd characters that move in and out of the book. there are scientific terms that sometimes our political terms and of course in the middle of all of this is kind of where the story is. and i was having a conversation with my very excellent editor nanogram and she said to me something very pivotal. she said we were talking about something completely different and she said if one forgets the
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book publishing industry and one forgets the vast paraphernalia that allows the book to come into play, the bookstore, the actual product, the printer, the business of book making and marketing etc. she said you know a book is an amazing instrument by which one author sitting alone in the room can talk to one reader sitting alone in a room. and that comment resonated with me very deeply because i thought to myself, if you forget for a second the vast paraphernalia of medicine, the c.a.t. scan, the mri, the billion-dollar devices, the national cancer to do it is the wonderful crown jewel of medicine in this country and others. in the end of the active medicine is a mechanism by which one person sitting alone in a room can talk to another person, one doctor sitting in a room can talk to one patient sitting alone in the room and that
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analogy was a very deep for me because it reminded me about what was essential and what was not essential. and the essential piece of it was that much like a book, medicine is about storytelling. medicine begins with the most dramatic act. if you take away all of its paraphernalia ultimately medicine begins with someone saying tell me your story. what happen? and that is the first thing that happens when you meet with your doctor is that you begin to unpack the story and as i make a claim in the book, doctors tell the story back to you, and it is an ancient interchange and probably one of the most ancient interchange is that we have as human beings and that itself, that process in itself begins the unpacking or unburdening of an illness. long before you receive your first dose of whatever medicine you will or will not receive.
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it is the unburdening of the story that is the first in medicine. if you forget that it seems to me that something very important happening in medicine. and once i came to that realization again inspired by the common, it began to become very clear to me how one could write this book, again remembering that there was a vast history here but it could be written through the eyes of patients. it could be written by telling stories and if i could tell stories that began at whatever point in time for thousand years ago if i could fulfill those stories and flesh out these stories than what seems like an insurmountable problem which is how does one tell this history, it would become actually solvable, which is to tell the history via moving from story to story to story typically focusing on those who were right there, those most directly and that is the patients.
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again, that was the solution in principle but then that raises the second question which is how does one find these same stories? how this one uncovered the story of the woman who experienced breast cancer in the 1950s. remember, i recount a moment in time in 1950 when a woman calls up "the new york times" and she says, i would like to place an advertisement for survivors of breast cancer and "the new york times," the society editor gets on the phone and says actually we -- and "the new york times." what if we said a survivors group of women -- this is 1950 and when "the new york times" came to write about my book i said sure you print that because it is a reminder for all of us including us, doctors, that we need to be humble about what can and cannot be achieved here.
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so this was the background. again the stories, the word that can't be uttered, word that is whispered about and again the question was what were the stories? and one threat became very early on is that i knew somewhere in this story would have to be the story of one of the most remarkable women in recent intellectual history. merry laughter who among many other things erected her philanthropic energies. she was an initial woman for her times, and onto bruno or, a person who then directed an enormous amount of philanthropic energy towards solving, i she put it, transforming the geography of american health and if there was one sort of central characters spinning for the story it would be married.
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for mary, it very quickly -- i found sidney farber who begins the book, mary's friend, scientific collaborator and mary gave clinical legitimacy to the war on cancer. sidney provided the scientific stability for the war on cancer. so the book then begins with sidney farber. sidney farber was a pathologist. we began in the 1940s. he was a so-called doctor of the dead is primarily an oncologist in the 1950s who performed autopsies. he specialized in children pathology, and typically bodies of children who had died in the hospitals and then wheeled down into the basement laboratory. the laboratory was no bigger than about 12 feet by about 12 feet, kind of a frozen cube at the bottom. so that is where we are in 1948.
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and then, farber became interested in trying to find a mechanism or an understanding of the disease which was extremely lethal, a swiftly lethal corm -- form of cancer, acute lymphoblastic leukemia and that is where story begins. lymphoblastic leukemias of disease that typically although not always affects children and usually in the 1950s it was almost uniformly 100% mortality. often kids with diet or would be diagnosed, and they would die within a span of one week or two weeks and sometimes they would live longer. farber became particularly interested in this in one of the reasons leukemia unlike many forms of cancer could be counted and as a talk about in this book science begins with measurement. whenever you can measure something you can begin to perform scientific activity on it and this was a time before cat scans mri's.
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was hard to find the size of a tumor that was buried inside and leukemia because it is a tumor of the blood could be counted because you could draw a drop of blood or perform a bone marrow autopsy and in the blood you could see the death of the life of the leukemia cells and thereby you could say this is working or didn't work. was an objective by one could -- the increase or decrease of leukemia cells and farber became very interested in this. now harbor soon figured out one of the things that would be very interesting would be to find a chemical that but thereby kill these leukemia skills and therefore he launched this chemotherapy but he -- about such a chemical portrait turns out there was an indian chemist, chemist born in india and he had come to boston to havard to study at the school of tropical health. now he didn't know that as we
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all know there is nothing tropical about boston. so he was stuck in the middle of winter. he was stuck in the middle of winter and he couldn't find a job. he found a job in fact cleaning. that was the best job he could get, but then somehow through a series of exchanges he eventually found a job in the department of biochemistry and made fundamental discoveries. he discovered agp and discovered as some of you might know a very important molecule, several discoveries but because he was indian, he was denied tenure and he was sent off from havard. he sent himself off to a pharmaceutical company in new york called leather lee, subbranch of the american company. there he took up the problem which is a very interesting problem and that as is he began
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to synthesize many vitamins, synthetic versions of vitamins. one vitamin that was used was fully tested. in the past, an english physician, a young woman who had figured out that folate acid was responsible for the growth of normal blood cells. in other words often in women particularly pregnant women if the it deficiencies if he didn't have enough full fully tested than your blood wouldn't grow normally. farber began to put all of these things together piece by piece. he started wondering, well wait a second, if folic acid is required to make normal blood merrill then could it be that if you walk folic acid you could block the growth of malignant blood? in other words he said to himself, if folic acid is a factor, key factor for the growth of normal blood cells, then could one take an
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anti-collate and thereby block leukemic cells. he began to fantasize about a -- and this was a drug that he had discovered during the process of finding solely. he had found if you synthesize an anti-folate. farber wrote to him in new york. he sent him an anti-folate and he began to inject -- farber began to inject children with these anti-full extent demonstrated for the first time in history that remission in childhood leukemia would execute therapy. he comes out of his basement and in fact the idea of using an anti-metabolite is central to even the way it is performed today. ..
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i kept saying to myself, well, i'm on page 60, this book is never going to get written, and then i got dejected and thought i would go on a vacation to my parent's house in india, and someone said to me, the chemist, only one biography, he said it's about 85 years old, but he lives three blocks from my parent's house in india. [laughter] i said, fine, i'll talk to him, and we're having a conversation, talk for an hour about the chemistry and ect., ect., ect., i'm about a leave and he says before you go, i don't know if you're interested, but i was in boston 1950s visiting the clinic in other words to compile this book, and i have a roster of all of his patients with leukemia,
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and that was a stunning moment for me, and out of that came a series of parties' names and pictures, and that's how i found this missing child, and rs was robert sandler, and, in fact, the boston sunday herrailed printed a picture of him as he began to respond to therapy. none of this is searchable. this is a time it's nots indexed. i would have never, ever discovered him. in a sense, this was a metaphor for writing this book which is that you might look for something, and yet in the reality you might find it 6,000 miles away, and the second met tore was that things always come aarp. there's a circularity to the process and circularity to history, and so i came back to boston now armed with the name
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of the child, and then using the medical records and using the boston directories address book, i could fine his parents' names, and then using the records the death records that were accessible, i could find the exact time where he died, where he was buried, where he lived, ect., ect., and all of the sudden, this story that had vanished came alive for me, and that's how, again, that's how this book got written. the first passage i'll read to you is now going to be what i call -- now that you have the behind the scenes look is the front of the scenes look about what happens once you've done all the leg work as it were and found this child, how then you can construct a story because, again, piece by piece, it's -- for me it started coming
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together. here's a section where i reinstruct construct the story of the child having visited his house. seven miles south of boston in the town of dorchester where is where he lived, is a typical suburb with the industrial settlements to the west, and in the late 1940s, waves of jewish and irish immigrants, railway engineers and factory workers occupied rows of houses snaking their way up the avenue. again, part of writing the sentence was now i could go back to the history of the town and read about that history and reconstruct and it turned out his father was a shipbuilder, and he was linked into the larger history of the town. the town reinvented itself as a family top with parks and playgrounds along the river, the golf course, and a synagogue.
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on sunday afternoons, families converged at frapping lin park to walk through the pathways and watch animals at the zoo. again, a small note here which is that when i was writing all of this, i kept thinking, i went to the house and looked out of what might have been his window, i don't know exactly where he lived in terms of, but looking out to franklin park, at that time, part was a zoo. i thought if i were a 3-year-old child, what would i remember most of the zoo? i had a daughter then, and i thought what would it be? i thought it has to be the animals. it took only a couple readings to figure out there was ostriches that new, and, again, history is so circular. someone came to me as i did a reading in seattle and said, how do you know there's ostriches in
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the zoo? it was nice to have a little article there was ostriches at the zoo. it was nice, strange odd things that give you pleasure as a writer. on august 16, 1947 in the house across from the zoo, the child of a ship worker fell ill with a fever that waxed and waned without pattern followed by others. he was 2 years old, and his twin was in perfect health. truth being stranger than fiction, we talk a lot in this book about how genes are activated to cause cancer. if you wanted to find a mechanism to describe this, to describe the role of carcinogens and ab normalities and the idea there's a family history, you probably choose two identical twins, and one of them develops cancer and the other does not,
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and that allows you to begin to enter the biology of what makes one twin have cancer? i didn't ask for this, and of course, there is a twin. robert had a twin, and therefore sets up the capacity for the discussion to happen down the road about the idea of what is it? what does a twin mean in genetic terms for cancer? i'll come to that. now, we enter fasher's -- farber's paper again and how dense medical writing can be because in a very cold clinical paper, there's the story of human beingings being told, and when doctors exchange papers, what they are really exchange, again, i think, are stories. stories dressed up in technical language, but ultimately retaining stories and we return to the paper and just lit ramly -- literally restating what's in the paper. ten days after the fever, his
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complex turns to a milky white, brought to the children's hospital in bos p. his spleen that stores and makes blood was enlarged. a drop of blood under the my cro scope revealed immature blasts dividing in a frenzy reproducing. he arrive the at the hospital a few weeks after farber received his first package. on september 6, 1967, he began to inject sandler with acid or paa, the first of the antifolliates. a toxic drug was not required. parents are informed about a child, but chirp were not confirmed or consulted. the human code were experimenting on parties was drafted on august 9, 1947, one
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month before the drug and the paa trial. it's doubtful they had even heard of such a required concept code. the drug had little effect. over the next month, he was lethargic and was limp. joint aches appeared and pains and the leukemia burst through his bone causing a fracture and unleashing an intense indescribable pape. by december, the case seemed hopeless. the tip of this more dense than ever with cells dropped down to his pelvis. he was withdrawn and on the verge of death. on september 28, and we know that from the papers, there was a new version of the drug. this one was a chemical with a small change from the structure of paa. he snatched the drug as soon as it arrived and up vice president-elected the -- injected the boy with it, but the response was nothing.
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10,000 in september, 20,000 in november, and nearly 70,000 in november stopped rising and hovered at a plateau, and then even more remarkably, the count started to drop, the leukemia drops flickering and all but disappearing. the count dropped by one sixth of the peak value. the cancer did not vanish. there was still cells, but it abated, frozen into a stalemate in the frozen boston winterment on january 13, 1968, he returned to the clinic walking on his own. his spleen and liver slung so dramatically that his clothes were lose around the abdomen. just a little observation in a clinical paper, and he says,
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ra's clothes are loser. what an amazingly vivid description. i mean, if you want to describe the remission of a child with leukemia, what an amazing choice of simple words that tells you this child was so swollen his mother had to make new clothes, and now this child with the spleen reseeding, the clothes are lose. that's the remission. you don't require much in a medical paper to reconstruct a story that is vivid. his bleeding stopped, his appetite was ravenous like trying to catch up on six months of lost meals. by february, the alertness, nutrition, and activity were equal to his twins. for a month, they seemed identical again. now, like all stories, this one also has an epilogue, and that is more amazing than the story itself. about ten days after the book was published, i got a phone call from my editor saying you
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need to sit down because this is an important phone call. i was writing a grant on my computer, and i sat down, and it was elliot sandler on the phone, and he had walked into a bookstore, never having known about this book, remembering the story of his twin who had died at 3 years old, and people who have the copy of the book know that the book opens with to robert sandler1945-1948 and those who came before and after him. he opened the book, he lives in mains, i would have never found him. he opened the book, and he saw his brother's name, this brother that vanished from his life at 3 years old, and he was moved to tears then, and he went back, and he told me this amazing story which is his mother, hellen, whose picture is in the book because i found her picture from the "saturday evening
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post". hellen and robert and elliot and the whole family was jewish, and this was a time when -- this was, i mean, still remains, that she was a deep believer, and as many of you might know, opening a body, performing an autopsy after death is considered a violation of sanctity, and she didn't want her child to be autopsied, and the only way to learn from the first remission was to perform an autopsy, and so farber begged hellen to let her open robert's body and perform a normal autopsy, and she refused, and finally he really begged her and said for the sake of medical history and science, let me open the body up. she said, fine, do it. through elliot told me, this decision hanted her for decades thinking to herself it was the
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wrong decision, and so i think the finest phrase i got from my book is from hellen who said to me that the book brought her story to a close. she said that now robert has found a place, a rightful place in medical history, it was as if her decade long hanted memory had come to an end, and i think that's in some ways, you know, finer phrase than any i received and the perhaps moving thing that happened to me around the book. i think i have time for one more passage i'll read, and this is from the end of the book in which takes up a very different kind of challenge. the first kind of challenge that i described to you is the challenge of story making which is how do you populate a book? it's the challenge that appears in the content. a book like this faces a different challenge, and that's the challenge of summary making
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which is at the end of the book, how do you summarize 14 years of history and prepare to give -- how does one tie up all of this? the quick answer is there is no simple solution, and that's something you learn in the book. i mean one of the challenges in the book is there's no answer. i did not want to write a book that said this is how you cure cancer like eat broccoli or some nonsense like that. [laughter] here i take up that challenge by actually performing a thought experiment. i recount the story of a persian queen who is described in no less than about four lines and becomes one the earliest descriptions of what might have been breast cancer. again, we don't have a word for carps in this time -- cancer in this time. in writing histories which, of course, is a description of the
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early history of the west particularly focusing on greece, sends a little bit of a message and throws her off in two or three lines, but describes the idea that the queen of persia developed a swelling in her breast, a mass in her breast as others translated it, and her response in contemporary prose, her response was she was so ashamed of it, she hid herself in her shame. remember, 19 # 50, -- she hid herself in her shame and did not let anyone examine her breast until a greek slave intervenes and promises to cure her, and he does cure her, and does so probably by performing one the first recorded lump estomies of cancer. as a returned favor, she would
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persuade her husband, the king of persia, invading the eastern border of persia, persuade him to up vade the western border of persia so he can return back to his native greece. in doing so, this launches the persian war. here is this woman who, and i'm actually quoting, literally quoting from the histories, the moment mountain histories when the face of persia as if were turns from the eastern face to the western face because of the illness that the queen has. he dedicated four or five lines, but this launches the early history of the west and the turning of the fashion of persia away from its eastern border towards the western border that we know as the persian wars. we now 500 pages later return
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back. the persian queen who likely had breast cancer in 500 b.c., imagine her traveling through time, appearing and reappearing in one age after the next. as she moved through the ark of history, her tumor frozen in behavior remains the same. her case allows us to look at past advances in therapy and to consider its future. how has the treatment and prognosis shifted and what happens to her later in the new millennium? first, the clinic in egypt in 2500 b.c.. there's a name for her illness, it's one we cannot pronounce. there's a diagnosis, but no treatment he says closing the case. in 500 b.c. in the court, she prescribes the mas techmy, and # 00 years later -- # --
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200 years later there's a tumor with a name that brings it to the future and this is the name of cancer because he images cancer as a crab under the skin and the vessels spread out like the legs of a crab under the skin. the met tore call -- metaphor of cancer permeates this illness. a thousand years flash by, it is purged from her body, but the tumor grows and relapsing. the surgeons understand little about the disease, but cure the cancer with knives and scalpels. these are real documents from historical text. there's frog blood, and other chemicals of treatments. in 1778, her cancer is assigned a stage early localized breast
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cancer. they recommend a local operation and for the latter recommending remote sympathy. when the queen reemerges, she encounters a new world of surgery and the breast cancer is treated with the boldest and most definitive therapy thus far with the large extension of the tumor removed in the deep chest muscles from the armpit to the collar bop. that treatment, i go through that story in the book and turns out to be essentially a failure. it takes 90 years, 90 years before parties and doctors -- patients and doctors put the idea of radical breast surgery to test, and when it is tested 90 years after the convention, it turns out to be no different.
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radiation oncologists use x-rays and by the 1950s another generation of surgeons come bine two strategies. the carps is treated locally. in the 1970s, new strategies emerge, her surgery is followed by chemo therapy and the tumor tests positive for the estrogen resent tore. in 1986, her tumor is discovered to be too amplified and in addition to surgery, radiation, and therapy, she's treated with targeted therapy using her septum. it's impossible to measure the precise impact of these interventions and the shifting landscape does not allow a direct comparison of her fate in 500 b.c. and in 1989, but all the therapies have likely added
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anywhere between 17-30 years to her survival. diagnosed at 40, she can expected to celebrate her 60th birthday. it takes another turn. her diagnosis at an early age and her ancestry carries the question of what she carries and her genome is sequenced and there's a muation found. they detect a tumor and her two daughters are tested found positive, and they are offered intensive screening or drugs to prevent the development of pervasive breast cancer. for her daughterses, the screening is dramatic and might identify a small lump in one daughter and found to be breast carps and removed in its early stage. the other daughter might choose to under go others having the
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breasts and live out her life free of breast cancer. each of the sentences corresponds to a seminal trial. it basically as an oncologist knows, the sentences refers back to a very major single trial that proves or disproves a particular way of management of brc1 positive, er positive, or er negative breast cancer. i hope in a way that's understandable and somewhat humanized. moving into the future now in 2050, she arrives at her clinish with a thumb sized flash drive with the genome identifying every mutation in every gene. the mutations are organized in key pathways and organize the parts contributing to the growth and cancers and therapies are targeted to prevent a relapse
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after surgery. she can begin with one drug, expect to switch to a second cocktail as the cancer mutates and switch again when the cancer mutates again and take a form of medicine to prevent a cure. this is progress, but before we become too dazzlinged by her survival, we have to put it in perspective. pancreatic cancer in 500 b.c., and the proknow sis is little changed in the years to follow. if there's gull bladder cancer, her survival chances changes marginally over centuries. it her tumor or was negative and unresponse to therapy, then her chances of survival will have barely changed from the time of hunter's clinic. given leukemia or hod kins
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disease, her survival -- we do not know the basis, and cannot fathom for instance what makes pancreatic cancer different from cml or the breast cancer. what is certain, however, is that even the knowledge of cancer's biology is not out of our lives. as one suggests, we might as well focus on extending life rather than eliminating cancer. this is done by redefining victory. that's the second passage. how are we doing on time? is there time nor one more? >> sure. >> i'll read the last short pass camming in the book, and i think it's a final summary of the book.
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this passage is -- well it's the hardest for me to write, and in fact goes back to the question that john talked about why i had written this book, and it was written as an answer to a question that a woman had raised, and so we return to the story of that woman. this is an incredible woman who i treated while a fellow in bos p, and she had an abdominal sarcoma, relapsed, another remission, incredible remissions caused by then a new drug, strikes remissions, and she had an unbelievable character. she was a psychologist, and she essentially followed the trail of this drug throughout the country moving from one clippic
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to the next enrolling herself in trials, creating lists, creating her own community every time around herself and engaged the community and asked questions and pulled herself into those trials. there was -- she had at one point in time was receiving chemotherapy using one of these drugs while living in a trailer home. she would move on to the next one creating her own little trail all around the country, ab unbelievable perp, and then finally she had had her last response, and then her tumor was completely resis tent and did not respond to the newest forms of therapy. this is the last time i see her, so i'll pick up the story. the new drug, the last time she had the drug, produced only a temporary response, but did not work long. by february, 2005, the cancer
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spiraled out of control growing so fast, she recorded the weight in pounds. her pain made it impossible for her to walk from the bed to the door, and she was hospitalized. my meeting with her was to the to discuss therapies, but make a reconciliation between her and her medical condition. as usual, she had beaten me to it. when i entered her room, she waved her hand in the air and cut me off. her goals were simple. no more drugs. the six years of survival from 1999 and 2005 had not been frozen years, but cleansed her. she severed her relationship with her husband, intensified her bond with her brother and oncologist. her doctor, a teenager in 1999 and now a mature sophomore in college grew to be her closest friends. family breaks some and makes
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some. in my case, it did both. she wanted to go back to alabama to her own home to die the death she expected in 1999. when i recall that conversation with her, embarrassingly enough, the object stood out more than the words. a hospital room with the sharp smell and the overheadlights and tables piled with books and postcards. a standard issue with the hospital picture filled with flowers on the table by her side. she was sitting by the bet, one leg danging l casually down wearing her interesting combination of clothes and large pieces of joule ri. her hair was arranged. she look formal and frozen and perfect. she seemed content. she laughed and joked.
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she made wearing the tubes effortless and dignified. only years later did i put into words why that left me feeling humbled and the gestures were larger than life and the objects were symbols and why she was an actor playing a part. nothing, i realized was incidental. the characters of her were almost responsive to responses, almost reflective of her ill rns. her clothes were lose and vivid, devois of her add moo min, and her jewelry was large, and the room had pictures and flowers and the cards on the wall because without them, it's any other room in any other hospital. she had her leg at the angle
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because the tumor up vaded her spine and paralyzed her other leg making impossible to sit any other way. her jokes were rehearsed. her illness tried to humiliate her. it tried to make her an undesired death, and she responded with avengeance moving to be one step ahead trying to jut wit it. it was like watching someone in a chess game. every time the disease moved posing another constraint op her, she made another move in return. the illness acted, and she reacted. it was a morbid game, a game that had taken over her life. she dodged one blow to be caught by another. she, too, was like the queen stuck peddling furiously to keep still in one place. she seemed toture something essential about our struggle against cancer that to keep
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pace, you have to invent, reinvent, learn, and unlearn strategyings. she fought it fiercely, madly, brilliantly, and zealously channeling all the fierce energy of generations of men and women who fought it in the past and in the future. her quest for a cure took her on a limitless gorpny to interpret blogs and trials halfway across the country to a land scape for desperate than she imagined. she deployed every last morsel of her energy to bequest mobilizing and remobilizing her courage, summoning her will, wit, and imagination until the final evening she stared at her resourcefulness and found it empty. on the last night hanging on to life by a thread, summoning her thread of dignity as she wheeled
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herself to her bathroom as if she had lost a war. june 2010. thank you. [applause] >> he is going to take questions now. i'll bring around a microphone, so do you want start the question until you have the microphone. also, because this is filmed for tv, for privacy reasons, please don't ask any perm questions. thanks. >> by personal medical questions. you can ask questions about me. [laughter] i'll start if i may by asking john a question, and that is tell us a little bit about how -- what's happening at the national cancer institute? you've come here from washington. what's happening in the
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institute in terms of the new administration and this sort of sputnik comment and what you think is happening in this administration with respect to cancer. >> thank you, excellent question. i first wanted to comment i was most impressed by your elegance and ability to communicate. i think by being able to educate america and the world about cancer, it's really my hope that someone in a field other than medicine will probably be the one to find the answer to cancer like gas that was found on the battlefields. one lesson i learned at ucsf, very often it's the medical students, the youngest train knees who ask the most provocative questions and who move the field of medicine forward, and i really wanted to congratulate you. really, i was most impressed during your discussion of ser renne dipty, and i really hope there's the opportunity for
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someone here tonight to think of new answers just like the apple slogan, think differently. there's a lot of excitement in washington, d.c. right now. there is a pitch battle to either change or repeal the affordable care act, but one area that continues to move forward is the amazing amount of work, clinical frills and studies undertaken at the national institute of health and the national cancer institute. i hope that the budget will be able to be approved and funding will be preserved to continue all the incredden work that's being performed at the national cancer institute. the institute offers tremendous hope for parties from the exier world, and it appears that the commitment of the obama administration to discovery, to innovation will continue, so i think for cancer patients all
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around the country and the world that there's many great things to come from that institution. >> what are -- who is fighting what? >> the battles are political. they are about how we are going to change or repeal the affordable care act and one of the -- there's many strategies, i turn your attention to an article from the "wall street "wall street journal" last year about the strategies to either defund, disallow, repeal, or to change the legislation that was passed last year. it really is my hope that we can be constructive and to move above the debate and identify those portions of the law which are working well and identify the ones that need to be improved and to keep this process of health reform moving forward. >> thank you. i think that's absolutely vital. sorry, yes, questions.
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>> [inaudible] >> hi, i'm dr. jordan will burr, an old time oncologist, but i wanted to make a comment. you have a fantastic book -- [inaudible] you have these right on, right on. >> thank you very much. >> thank you so much. >> one of the things again because the constraints of time, to have a book like this, one of the ways you -- it really relies on primary interviews aside from the or civile research, a lot of interviews, and i think there's about 400-500 interviews carried on over time and the picture of
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farber was to do that, to come at him from different angles, and human beings are complex, even a character like farber, people did not like him. he was an unpleasant character to some, and that's important to convey because otherwise you write a history that's not real. thank you for your comment. >> have you ever been a doctor in a war? >> that's a good question? >> not in the sense you might understand war. i have never been a doctor in the military forefront, but one plight say this is also a war in the sense that when we sometimes
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fight wars between people and human beings fight each other, but sometimes we fight more important wars against things we can't see, and i might add that cancer is one such entity. i don't like using the word "war" sometimes because it feels as if then patients are soldiers, and if you don't survive, you become a loser in such a war, so i don't like using that metaphor, but for some people it works. some people really imagining us in a battle against cancer is important, and my usual approach to this is if that's a metaphor that works for you, use it. you know, who am i to tell you what metaphor works for you, so, yes, the quick answer is i have never been a doctor in a war, but i have been a doctor in this more abstract war, and there are other wars that are also fought right now against more abstract
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entities, political wars, and part of that is also part of this book, how does one fight a political war. how does one create strategy, not only scientific strategy because one thing we know is that if we are to engage cancer whether it's war or not, if we are to engage cancer, the solution can't just be a scientific solution. it will never be a scientific solution. it has to be a political solution, a cultural solution, and all this content is in the book. eradicating tobacco, it's not a scientific solution, but a cultural solution. you know, solving the genome of pancreatic cancer is different, but requires another strategic element. every piece of us, every piece of us as society and human beings is somehow engaminged -- engaged in this, and everybody can contribute i think.
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>> you seem to speak of cures of cancer, but what about prevention? there's research going on an vitamin d is a popular issue now. can either one of you comment on your outlook on the preventative efforts made and any optimism there? >> well, yeah, several comments about that. incidentally, there's a large section in the book dealing with prevention. there's no mistake that, in fact, one of the most historically, in fact, one of the most seminal moments in the war on cancer is when this idea of fighting a war or a curative battle began to fade away and research was focused on prevention and that continues today. my thoughts are many. i'm not going to talk about them at great length. i will say i'll make two comments. one comment is that it remains shocking to me that the most preventable cars jen is still at
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large. we're fighting this complicated battle on the hill about how to do this, that, or the other about health care costs. meanwhile, the largest known car sip jen -- carcinogen and there's a great irony in this and people talk to me about radon or known carcinogens, fully acknowledged car sip jens, but we're not talking about the huge elephant in the room which is tobacco. my question answer to the question is some of the battle against prevention is going to be political and a cultural battle, but the second point that i want to raise which is to me very interesting is that it seems that the silos of prevention and treatment and carps biology are collapsing in many different ways, and i think that's encourages. in other words, we used to think
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that preftion, cancer prevention people lived in one compartment and treatment people lived in another compartment. that's not the case anymore. one example, there's many, but one example. here's a drug that was really created to originally to treat advanced stages of er positive breast cancer, but turns out to have a role in prevention. you can use that as a preventative agent in the appropriate population, appropriately identified and appropriately focused tools such as mammography as diagnostic tools to diagnose breast cancer used in the setting. in fact, even the genomics, the understanding of the cancer genomes has an important prevention role particularly on breast cancer, so there is a way in which the new cancer is
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forcing us to rethink the silos, and i think that's very good to allow us to rethink about prevention in a way that just doesn't relegate prevention to the one end of the spectrum and the fusion of the two disciplines that's been happening for awhile is very encouraging to me. any comments? >> i agree entirely. we can cure carps if it's caught in time. we've burned them, froze them, used ultra sounds, cut them apart, made vaccines, if caught earlier enough, we can cure them. to me, the question is about the prevention of recurrence, and what we have not solved, you can have a tiny few mori and remove it in its entirety, but months or years later, you'll discover it spread throughout the body, and conversely i saw the largest tumors you remove, and they never recur.
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the fundamental next step of the surgical perspective is the vision of recurrence. >> viruses and bacteria evolve, and therefore the war against them is never over. it's temporary victories for decades. do cancers evolve with your 5,000 year look? >> cancer evolves in a microscopic sense. in other words, within every tumor, there is a kind of battle that's going on, even without treatment so within every tumor, there are clones that are growing out which are resis tent, for instance, to escape your immune system, and within every tumor, there's clops that move to other parts of your body.
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when you take chemotherapy, you might kill many of the cells, but there might be some cells that escape and therefore evolve out of that, so carps, and we talk about that, it's an illness, and that's what, of the in fact, that's part of the secret of how unbelievably successful cancer cells are in invading. every time it's coming back to the metaphor. every time you do something, the cancer cells are sort of pushing back or evolving, and it's much like treating a disease with -- it's like treating a bacterial illness or much like treating a disease with viruses. there's constant mew tigs and -- mutation and evolution happening. it's trappedded inside the body. >> my question is regarding the role of the patient during therapy.
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for myself when i was diagnosed, the center made it clear it was patient oriented and i had a part to play what direction i was going to take, but the reality is at the time when it happens and everything moves so fast that you really feel like you don't have a whole lot to say because you don't know very much. do you have any comments on that? >> well, my comments in general, that's an unfortunate situation. that's a situation i hope we don't find ourselves in increasing over time. i hope that we have given the pressures of time and money that are occurring in health care, i hope that we have the time to listen to stories and figure out how to best treat not statistical entity, but a human being. i have to say it's very tough. sometimes it requires a kind of
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listening skill that we, as doctors, have forgotten. some people might not want a certain kind of treatment, and it's very hard for physicians to listen to that. it's almost as if we forgot that listening skill. i hope that doesn't -- i hope we have a way to keep that in medicine. any idea? >> well, my thought was i didn't feel my doctor was not listening to me. i felt like i am not someone who studied carps my entire life. i knew people who had it, but i knew little about it to get to the level to ask a question and make decisions. i would have had to move so fast i would have had to be reading up on everything. when it gets right down to it, i trust -- i have to trust my doctors, which, of course, i do, and i chose doctors that i trust, but i think as a patient, a parte does feel pretty much
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out of control. >> well, i mean, that's fundamentally the case. it is the case that wop feels out of -- one feels out of control. you know, i think this is one the fundmental challenges of medicine. how does one involve the patient in a way that's respectful of the patients' wishes, but on the other hand, doesn't make you see that it's your job to the the expert, you know? once you're the expert, in some sense, the process defeated itself. there is a reason behind someone to get all the informing, and there's a huge amount of information so in some ways i don't know the answer. i have two general strategies. one general strategy is ironically, at least in my practice, ironically i kind that patients become more confident
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when you tell them you don't know something. it's a peculiar irony to posed to saying you know something. it's an irony in medicine of course like readers who detect a false note in one and a half nano seconds. patients sense false confidence in doctors in one and a half nano seconds, and the best way to build confidence is to be humble about what's known and not known in my personal practice. the second thing i think in some ways it is, in fact, there is a restoration of faith, and again, this is my practice, the faith in saying let me be the person who has the information, but you give me the direction for that information, so don't spend your nights looking on the web or the
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blogs. that's not what allows the process of healing. let me be the person with the information who gives you the information, and you be the guide for that information. i think in some ways that unburdens or relieves parents. they don't have to be the expert all the time because no one is the expert, you know. i'm not the expert, i know a little more, but that's the strategy. it involves active listening which i think is hard to do in these times. >> thank you. i learned that web research is the kiss of death. [laughter] >> i know. it is the kiss of death, yes. >> do you think that the vast quantity of chemicals used in various processes are contributing to an increase in the incidents of cancer? >> that's a tough question. i think some chemicals may be contributing, but i think on the
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other hand, one has to be careful about this idea of hypercarcinogennic panic. my general thoughts about this is that every chemical, particularly those that reach a certain concentration in our environment need to be quite rigorously tested, and in fact our testing mechanisms are improving. we used to form a primitive way of testing, very, very primitive and relies on the fact that these chemicals cause mutations. not all carcinogens cause mutations. it's an important test developed at berkeley, but it's very primitive test. we have much better tests for that, but with that said, i also disagree with this idea that, i mean, over chemical needs to be tested is exactly the right
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thing to say, but i disagree with the idea that, you know, we have a generally more can #* carcinogenic environment because we have to find what they are. it's a little bit like saying, you know, the water is carcinogenic. okay, but i have to drink the water. people say the air is producing cancer, but i have to breathe the air. you have to tell me in a very quantitative way at the dose that's available, this molecule in the air is causing cancer so i can remove that molecule. let's be specific about the claims. what is the chemical? how can we remove it? what role does it play in normal lives, and then remove them from our environment. >> i had a question that was similar to that. >> yeah, sorry. >> was i supposed to start now or wait? [laughter] i have a bit of a education
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which always makes a person dangerous. my question similar to his, but i'm interested in avoiding the par paranoia that the press encourages, so i wonder if there's some sense you have about the percentages of cancers that are basically just what i would call natural mutations, things that running around, living in a clean room all your life really won't cure, and what percentage, and i'm sure they are different for different cancers. smoking we know the answer, but excluding lung cancer, is there a sense of percentage that are just natural mutations inherited or that come with age and which ones might be industrial car gin jenically oriented. >> that question, as you can imagine, is an extremely
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difficult question to answer. it's answerable for rare cancers. there's an old addage which is large rare risks are much easier to assess than small common risks. in other words, you know, if there's a sudden economic of liver cancer which is associate the with the particular toxin, those risks are easy to determine, and therefore you can determine the toxin. it's when you have a small increased risk in a very common form of cancer like let's say breast cancer to detect it took a huge study to detect the very substantial, but nonetheless relatively small risk of increase of breast cancer with hormone replacement therapy. this risk was large enough but
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it takes a sophisticated study to figure it out. the quick answer to your question, unfortunately, i'm not sure we're there yet in terms of technology and in terms of figuring out what these small common risks are. i suspect that for some carpses we'll never be there, because, you know, in the end can one determine whether there was raised by a natural mutation or carcinogen? it will be difficult. >> thank you for that fascinating talk and reading. you talked about how radical was institutionalized as a treatment for breast cancer, and it took 90 years to understand it was unnecessary and ineffective. i wonder if you can talk about any other examples of that that you've come across in your research, and in particular, are there treatments that are part
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of standard therapy now that ten years from now or 20 or 50 or 90, we will think of as ineffective or unnecessary? >> i certainly hope so. [laughter] well, i mean there's many examples, and i talk about these. one of the things in writing this book, and i know this was commented upon is that i also wanted to not write a so-called wig history in which progress leads to more progress and one ends in a sunny place. there's dark moments and stories in this book, and many of the dark stories have to do with the way medicine becomes a self-fulfilling prophesy or learns to believe in itself. this is one of them that believe it or not back to breast cancer in the 1980s, there was a strong sentiment that many researchers believed that giving radical
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chemotherapy would cure breast cancer and so radical it wiped out your bone marrow to replace with your own bone marrow that was stored away. it took another decade to disprove that, and part of the reason was that patients didn't want to enroll themselves in the trials, so patients had become so convinced that by their doctors, they were convinced this was the right thing to do that no one wanted to go to the placebo round. they said we believe this works, you believe it works, why go through randomization? in massachusetts, this would be interesting, massachusetts, there was a law passed called charlotte's law that forbade an insurance company from not allow ing a bone marrow transplant for breast cancer. it was felt the insurance
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companies would skimp, which they were doing, on breast cancer therapy. there was a law that was passed. basically it was breast cancer therapy mandated by law. i mean, there's example after example, and i certainly think it repeats itself for many forms of therapy we engage in today. >> i have a question on prostate answer. >> yeah, you might have to be loud. >> do people live -- [inaudible] >> are you asking what causes prostate cancer or why is there so many varieties? which of -- >> [inaudible] >> i think we don't know the full answer to the question.
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it turns out the prostate is one organ with malignancy develops in men at a remarkably high rate. what's very tricky about cancer is that prostate cancer comes in different forms. there's one form that does not detect easily, and you will not die of prostate cancer, but with it, and there's another form that can kill you. we have not begun to figure out how to discriminate between the things, and it's a huge problem, a problem that it makes a difference in the health care budget, the national health care budget because for every 10,000 of the one kind that you shouldn't be treating anyway, you're treating, you know, you're piling up costs. ..
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>> how to discriminate between the good kind and then leave all these problems that you're having in washington. so in technology and science that's the best thing that we can do. yes . [ inaudible ] >> yeah have we looked at -- do i talk about the additives? i spent -- spoke a little bit in the book about estrogens and pesticides. but it's an issue that really
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remains under -- there's a deep interest in it and a deep interest and particular at pesticides. and again i think that is the kind of integrated approach involving not just the old style epidemiology but a combination of biology cancer genetics that would solve these kinds of puzzles. in general i think especially with there is a smoking con there. i don't know if people agree or disagree with that. >> questions in the back and maybe in front. >> i was wondering if you could comment on your evolution as a writer. a little different -- >> in the sense of --
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>> this was your first book an extraordinary book i'm just curious how you involved as an author. >> you know, my general approach to writing this book or any kind of writing that i do happens to be formed with a -- front through my scientific work which is our -- i like to write books that answer questions. so if i have a question, i will write a book and in this case i had a very urgent question. in terms of writing this book, i learned to write when i wrote this book. you might sense that as the book progresses from the 200 page or 400th page you can tell that i'm learning to write. i'm different as from the first page. i work backwards and tried to clean up what i had done
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before. but, again that remains. and i do realize that the writing itself evolves. so that's one feature of it. in terms of process -- i talked to this about spoken to others already about this. it's been written about -- i'm a deeply disciplined writer in the sense that i write here and there. often i write exclusively in my bed. [ laughter ] i prop myself up with pillows when i was writing all of this. often i would have the early mornings i would write when i could have a -- and i think the most important thing in terms of the writing of this book, and again, if you're a writer it becomes i think clear to you.
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this book lives at its what i call it seems. by that i mean the content was easy for me to write. it was the fact it was the stitching together of the content. in other words how does one go from 1994 back to 2000 b.c.? and then move forward to 500 a.d. what were the seems and how does it fit together? and sometimes those stitching is very tenuous so it's, in fact, the real discipline in this book -- particular book was that stitching. how does one manage? and the answer to that is that i tried to imagine a very confident reader and tried to say to myself -- the kind of person who will go through this book is the kind of person i trust to move through those seams, and i will rise to the
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book and they will rise to read it. i'm not going to make some kind of compromise about it. it gets into pretty -- the science gets pretty dense. i didn't spare the smoas contemporary details. we talked about cancer genetics from 2008 so it gets really complicated but the book lives in its seams. so those were the features that allowed me to be -- to write. one last comment and that is that lots of people have asked me -- i mean -- who i've been asked to rival is a friend and so i learned to write from people who've written about medicine before me. so there was a learning process reading a lot of reading. and that raises the question about it was a very interesting question to me personally.
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which is is that was there something about being indian in this book? this particular book? and the fact that it also happens to be from the continue tent -- i spent a lot of time thinking about it -- even today and my answer to the question is i think the most important thing about being indian and writing this book was the fact that india gave me the freedom not to write about india. and in doing so allowed me to write about sympathetic that was entirely universal. had nothing to do -- but it was almost as if i inherited a kind of writing tradition which allowed me to not have to write about the local politics or the culture of a subcontinent and write something is that you and i could have a conversation about it. it's a cultural freedom and i'm
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not sure i can convey how deeply that was infunchal to me. i thought i could write about something that's universal and i should thank being many america for that and also thank the political freedoms of my country. countries. yes. maybe i'll take a last couple questions. two questions. >> in recent years there's been a lot of research to it's been linked to cancer i wonder why you didn't include it in your book and do you think a fair piece will come out of this research to fight against cancer? >> so again this question goes back to the question of what was included and not include the? in general i included things in the book that have led to human therapies. i try to avoid so, in other words, i -- if you look and really trace back everything
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that's in the book, whatever goes into the book really ends up in a human being. somehow. comes out of a genetic understanding and becomes a drug a preventive mechanism. things like races and an answering of metastasis and the immune system. i think are very important in the understanding of the biology of cancer but i did not meet that test of being able to be transformed into something that will impact the way we either treat or the way we deal with in preventive mechanisms of cancer. when they do so i'll be forced to write an a-- addendum to this book. >> they had done everything and beyond this it was something
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greater. how much do you think like either positive or belief in, you know, some sort of spiritual thing -- plays a role in curing cancer and what is your experience in all the patients that you saw? >> well i have it's good that we end with that question because i'm going to give a provocative answer to that. >> it is that i try not to believe that the psyche has a role in that so when people say, you know, there's a link between that and cancer i think it's precisely the kind of link that hands to a cancer patient who's plate is already full. twice the burden of their disease. so i try to shy away from that kind of thinking because it feels to me very negative in some ways. i know plenty of people who have had intensely positive attitudes
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about who have had incurable cancers and people who are unbelievably depressed and have mental illnesses who have lived perfectly cancer-free lives. so this idea that it causes cancer is to me an allege -- allergy to this idea. that being said do i believe that it allows one's ability to heal, yes. but there's no type of psych ye. some might use depression to heal. some might involve entering a space that's full of grief and depression. that might be their mechanism. and to force my understanding of whatever spirituality is or force my understanding of what a positive attitude is. again, i think ends up victimizing a patient. you know, who am i to say what your attitude is? you know, your decision you
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might decide that you're intensely you have an intense feeding of grief around your illness. right that's your mechanism of healing. i can try to help -- i can try to help people when that grief takes what i would call a kind of pathological form but even then i try to be kind of -- step back from it. and i particularly am allergic to this idea that the reason you're not getting better is because you're not thinking positively enough. i think that's part of the reason i choose to write this book. there are so many ideas that say that you're not getting better enough and not fighting hard enough. i think i'm very allergenic to that and i start off going there. that's where you want to be that's your decision but for me to say that as a doctor i think creates a cycle of blame that i really want to avoid.
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